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Deborah's tips! How to avoid triggers (food, lifestyle, stress) (Read 22327 times)
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Deborah's tips! How to avoid triggers (food, lifestyle, stress)
12/28/10 at 12:51:13
 

What should you be doing on a daily basis to feel better? You first need to identify your triggers. Everyone has different triggers, but we learn from each other and find many in common. Now, you may think you have no clue what your triggers are, but you simply need to pay more attention. How?

1. Food and drinks will really affect one's mast cell disorder. So, examine your foods. So many masto people are highly triggered by food. Do you know which foods commonly degranulate mast cells? It seems that many of the same foods trigger symptoms in masto people. For example, shellfish and alcohol are 2 major triggers in most people. I am highly bothered by food. Interestingly enough, when I dieted really carefully to lose weight, I ate only natural foods, very small quanitites, and not much variety. My symptoms practically vanished! That tells me how many bad things in my food are bothering me. Make a list of what bothers you even slightly, and eliminate it. Figure out your safe foods and eat just those. Unfortunately trying to be nutritious kind of takes a backseat when trying to simply figure out the few foods that are safe to eat. Worry about the right food groups later after you are "stabilized. Keep a food diary. Record everything you eat and how you felt later. This will help you know what you need to avoid. Once again, 2 biggie no-nos: shellfish and alcohol.

2. Examine your lifestyle. What needs to be changed in order to lessen your symptoms? Stress actually degranulates mast cells, so think about if you have any stress in your life and how to eliminate it. I chose to drop out of my Ph.D. program because of the stress, even though I was at the end of it and only needed to write my Dissertation. This reduced my stress levels greatly. I then started my own business. Being my own boss is great. I can work when I feel well and stop when I don't.

3. Fatigue. Make sure that you get a lot of sleep. Try to shoot for 9 or 10 hrs/night and it will help. (This is one I need to work on!)

4. Stress reduction at any given moment. When you feel terrible, do you sit and focus on it? Don't do this. Try to distract yourself. Pick up an exciting book and immerse yourself in it or find your favorite tv show or movie to watch. Focusing on what is causing you stress will not help unless you are creating a way to eliminate it. Otherwise, worrying about something (without doing anything about it) is wasted energy. It doesn't change the fact, and it only harms you physically.

5. Drink lots of water (I need to get better at this, too!)

6. Examine your environment. Are there any triggers in your home, such as mold, dust, etc? I evaluated my home, because I was out of town for a month and my symptoms subsided and when I returned home, I was a bit itchier and flushed than when I was out of town. I was worried that something in my house triggered me. Should I move? I don't know yet.....still investigating.

7. Identify all triggers and do your best to eliminate them. Don't feel guilty for the actions you need to take. I long ago realized that I need rest throughout the day. I have young twins, and a busy business, but when I need to lie down, I just do. I used to feel guilty about it, but not anymore. My husband now realizes that if I need to rest, then I am going to do it no matter what. Even with a cleaning lady, my house can become a cluttered mess quickly -- little kids can mess up a place in 30 seconds! But, that is just how my house has to be, because I can't clean it, take care of my kids, run my business, and deal with my IA. So, the house stays cluttered. Oh well, I do the best I can, and have simply rearranged my priorities.

As you can probably guess, I now have a pretty calm and laid back personality, but I had to work at it. The more you educate yourself about masto/IA and find the right help, the better you will feel. I guarantee it! I used to feel like I had the flu all the time every day. I used to have nasty attacks and end up in the ER. None of this happens anymore since I started with Dr. Akin and got on the right meds. I also live a life of awareness of my triggers, and I just incorporate avoiding those triggers into my daily life. Easy.

Here is an example of food triggers. These are my triggers. They are probably a good base of common foods. I don't cut out all of them entirely, some I can eat in tiny quantities. Here is my list with a * next to my worst triggers, although I am sure I will forget some. I never touch the foods that I put a next to. They will send me straight into anaphylactic shock.

My triggers:

Garlic (even the smell)
Onions (even the smell)
Spices with strong flavors * (even the smell)
Black or red pepper
Spicy foods *
Raw vegetables (but lettuce is fine)
Cooked vegetables: any gas producing ones, such as spinach, broccoli, cauliflower, eggplant
Cereal (simple corn flakes are as harsh a fiber cereal as I can eat)
Soups *
Fatty foods
Foods with preservatives
Alcohol
Yogurt
Milk (lactose free is fine)
Potato chips, fried tortilla chips , etc
Fried foods
Coffee, even decaf will bother me a bit
Chocolate
Meat, such as red meat, pork
Turkey (sends me to the hospital)
Some fish, such as salmon (mildly bothersome)
Fruits with fiber (such as apples)
Citrus
iced tea
carbonated drinks
red sauce for pasta
Chinese food
Shellfish *

Also, other common triggers for people are: stress, fatigue, heat (as in summer days or an indoor room being too hot), extreme temperatures, strong emotions (as in being extremely excited about doing something you are looking forward to), odors, and many antibiotics. It is important to realize that the triggers, symptoms, and medications are the same for Masto, IA, or MCAD. So, whichever of these one ends up with as a diagnosis, all of these triggers can apply.


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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #1 - 12/28/10 at 15:19:15
 
(Archived from sharon-nc - original forum)
I wish I had the calm and laid back personality. I am working on it, been working on it for a few years.
I know that stress is a huge trigger for me, I also know that I'd rather be playing extreme sports than trying to learn how to deal with stress. Cliff diving seems so much more relaxing to me that learning to deal. So for my first post to triggers, I'd like to talk about some things that I am learning to use to deal with stress. This could be the kindergardner's post on stress, but that may be where I am on the topic.
1. All my woes and worries - I write them down in a notebook that is then placed in a drawer. That way, I won't forget about them, they still exist, devine inspiration may come on one of them or I may solve the underwear crisis by tossing in a load of laundry. But the rule is that once its written in the notebook, I am not to think of it anymore. Its in the notebook so its still there, I just can't think of it. I get to keep my woes and worries, just not ponder them. Sounds crazy, but works well for me, and I wish I'd thought of it myself, but a friend with debilitating chronic illnes told me about it. He may have been wound as tight as me when he started the notebook project.
2. Accepting that there are limits to what I can do - this was not graceful by any means. And, I had to let go of the idea that accepting it didn't mean that I was embracing it or loving it. I was simply coming to the understanding that there are limits to what I can physically do. Didn't think I'd live through this one.
3. Sick days are not for hanging wallpaper - So I am at home because I am to sick to go and do what ever it is I want to do. Suddenly I realize that there are tons of household projects that can be done - need to be done. Once in fact, the only cure seemed to be to get busy hanging that wallpaper I wanted in the upstairs bath. I had all day to do it. Laying on the sofa was stressing me out - I had to do something. I was to sick to lay there and watch TV. So there was the wallpaper, suddenly tools and a ladder. This story ends with an ambulance, the ER calling my husband and my neighbor, a couple of epi shots and an overnight in the hospital. I now have a list of things to do to entertain myself on "sick days" -
listen to music
draw
read
play guitar or piano gently
computer games
write a story
invite a friend to come visit just to chat
Also, this is the husband's rule, but its very good - stay in my pajamas for the entire sick day so I am not tempted to go out and about. Pajama Day turned out to be a great rule because I will sit on the front or back poarch in my pajamas, but I won't hang wallpaper or drive the car or roam the neighborhood or any other ill advised idea that I can come up with.
4. Exercise - not cliff diving, sky diving, going in the boxing ring, or anything else like that. Gentle exercise that feels good to my body releaves stress. Somedays a yoga class works great for me. There are days when I can lift weights at the gym or even kick the punching bag. Swimming has always been a great one for me. Good exercise releases stress - key word on this one is - get it approved by your Doc and make sure that its gentle on your body. The boxing ring one was expecially bad.
5. Get enough rest - I don't enjoy resting, it seems wasteful - with all those other things I could be doing and I am laid up asleep? Crazy stuff. With much efford I have discovered that if I sleep 8 - 10 hours per night plus take an hour to wind down at the end of the day - I not only have less stress, but feel better. I thought this meant I was being a sloth. Turns out it means I need rest.
Trying to Stay Stress Free,
Sharon

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15 September 2008 11:36 AM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #2 - 12/28/10 at 15:21:51
 
(Archived from eener - original forum)
I find that writing in a journal is a great way to relieve stress. I start by listing 5 things that irritate me, and then I list at least 10 things I am thankful for. So, I get rid of the bad first and then I end on a positive note. For example...

Things that Irritate me...
1. not being able to sleep
2. my sister-in-law
3. when my kids have eaten all the cookies and I'm desperate for something sweet
4. women that show too much cleavage
5. men that stare at it

Things I am Thankful for...
1. fall leaves
2. comfortable underwear
3. family
4. my best friend
5. when there's a cookie left
6. that Merry Christmas feeling
7. Friday Night Lights (on TV)
8. freedom
9. hot chocolate
10. finally nailing that mosquito that snuck into the house!

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Renee 25 October 2008 09:50 PM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #3 - 12/28/10 at 15:22:53
 
Renee, you are hilarious! I bet that you could write a really witty column or blog, huh? I always admire clever writing. (All my degrees are English, so you could say that I have had a bit or practice at studying writing style!) Anyway, you really made me chuckle!

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Deborah  25 October 2008 10:10 PM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #4 - 12/28/10 at 15:24:03
 
(Archived from eener  - original forum)
Deborah, Yes, well, I majored in High School English(lots of writing), but I don't really like teaching that age so I moved to Elem. Love the little ones. I have 3 teenagers of my own so adding a classroom full of attitude all day would just be MAST CELL SUICIDE!!!!! Renee

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Renee 28 October 2008 12:53 PM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #5 - 12/28/10 at 15:25:41
 
(Archived from eener - original forum)
On a more serious note, since we are here to help each other........ My doc suggested going to a professional private yoga instructor. AWESOME!!!!!

My yoga guru made me realize that I was constantly under stress even when I said, "Stress? What stress?" She taught me to read my own body language and to really focus on breathing and relaxing. It helps A LOT. I highly recommend it. And this is from someone who has never had a message, I mean massage(see I can't even spell it), manicure, or pedicure, so obviously it was a big step for me.
I use it when I'm in excruciating pain to help alleviate it from 100 to 90, and I use it when I feel myself getting irritated. IT IS WONDERFUL. Try it. Renee

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Renee 28 October 2008 01:08 PM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #6 - 12/28/10 at 15:29:55
 
(Archived from terry-wi - original forum)

MY ANIMALS ARE WHAT KEEP ME GOING I WOULD BE A MESS WITHOUT THEM.

Mary and her husband Jim had a dog named 'Lucky.' Lucky was a real character. Whenever Mary and Jim had company come for a weekend visit they would warn their friends to not leave their luggage open, because Lucky would help himself to whatever struck his fancy. Inevitably, someone would forget and something would come up missing.

Mary or Jim would go to Lucky's toy box in the basement and there the treasure would be, amid all of Lucky's other favorite toys. Lucky always stashed his finds in his toy box and he was very particular that his toys stay in the box.

It happened that Mary found out she had breast cancer. Something told her she was going to die of this disease...in fact , she was just sure it was fatal.

She scheduled the double mastectomy, fear riding her shoulders. The night before she was to go to the hospital she cuddled with Lucky. A thought struck her...what would happen to Lucky? Although the three-year-old dog liked Jim, he was Mary's dog through and through. If I die, Lucky will be abandoned, Mary thought. He won't understand that I didn't want to leave him. The thought made her sadder than thinking of her own death.

The double mastectomy was harder on Mary than her doctors had anticipated and Mary was hospitalized for over two weeks. Jim took Lucky for his evening walk faithfully, but the little dog just drooped, whining and miserable.

Finally the day came for Mary to leave the hospital. When she arrived home, Mary was so exhausted she couldn't even make it up the steps to her bedroom. Jim made his wife comfortable on the couch and left her to nap. Lucky stood watching Mary but he didn't come to her when she called. It made Mary sad but sleep soon overcame her and she dozed.

When Mary woke for a second she couldn't understand what was wrong. She couldn't move her head and her body felt heavy and hot. But panic soon gave way to laughter when Mary realized the problem. She was covered, literally blanketed, with every treasure Lucky owned! While she had slept, the sorrowing dog had made trip after trip to the basement bringing his beloved mistress all his favorite things in life. He had covered her with his love.

Mary forgot about dying. Instead she and Lucky began living again, walking further and further together every day. It's been 12 years now and Mary is still cancer-free Lucky? He still steals treasures and stashes them in his toy box but Mary remains his greatest treasure.

Remember...live every day to the fullest. Each minute is a blessing. And never forget...the people who make a difference in our lives are not the ones with the most credentials, the most money, or the most awards .They are the ones that care for us.

If you see someone without a smile today give them one of yours!

01 December 2008 01:49 PM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #7 - 12/28/10 at 15:32:44
 
Awww...I love this story! How sweet! I have a huge furry doggie myself (long haired German Shepherd), so I can really relate to this story!

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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #8 - 12/28/10 at 15:34:12
 
(Archived from terry-wi - original forum)
Deb,
I have two golden retreviors, a toy poodle and a siamese cat that looks just like a white tiger. and lots and lots of fish. I never have stress when I am with them, just pure joy.They are lifes greatest blessings. Terry
01 December 2008 02:24 PM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #9 - 12/28/10 at 15:36:28
 
(Archived from rdnd6 - original forum)

Terry, I also have indolent systemic masto and have been to the NIH for testing recently. Can you tell me what meds you are on? I am on pepcid, prilosec, zyrtec and vitamin D with calcium. Rdnd6 Roger

09 December 2008 08:47 PM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #10 - 12/28/10 at 16:30:11
 
(Archived from  terry-wi  - original forum)
Roger,
Sorry I missed this post, I take 10 mg of zyrtec twice a day. 300 mg of zantac twice a day. gastrocrom 200 ml twice a day more if needed for stomach issues.asprin 325 mg twice a day,and 12.5 mg of toprol xl once a day. centrum silver once a day calcium 500 mg once a day. b 12 injections once a month. I also use an albuterol inhaler prn and carry epi with as well as benedryl just in case of an episode. I do very well as long as I take everything. for the bone pain I take 750 mg of vicoden with 10 mg of flexerol if needed only at bedtime to help me sleep as I work 10 hr shifts at the hospital. I have to have sleep. these are good meds if you can tolerate them. The asprin regiment has made a world of difference for my flushing and bone pain as well. I went off of it for 20 days for a procedure and boy was I sorry. hope this helps Terry
I guess I should mention this was my regiment before the NIH study Dr. Butterfield and my GI specialist Dr.Rajeev Nayer get the credit for this. Dr.Rajeev Nayar is the nicest most understanding doc in the Wis. area. he is super intelligent and willing to help anyone.He recieived his training at the NIH, as well and is in Racine WI

11 December 2008 08:10 AM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #11 - 12/28/10 at 16:31:52
 
(Archived from terry-wi - original forum)
Roger,
What unresolved issues bother you most in regaurds to the meds? maybe I could be of some help. Terry

11 December 2008 08:13 AM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #12 - 12/28/10 at 16:33:27
 
(Archived from patdal - original forum)
Does anyone have any suggestion on clothing.  My husband was just diagnosed although he has had mass cell for the last 4 years.  He must wear polos to work but by noon he is is in alot of pain.  He has just started his meds this past weekend and we know it takes time but he says he is in so much pain during the day.  He says clothes are over rated and if he could be naked he would be fine.  He also has allergies to certian dyes and fabrics.  He does wear 100% cotton polos and 100% cotton tshirts on weekends but he still has the pain.  He is seeing a hematologist at Mayo who specializes in mass cell.  He also had us see a neurologist and she put him on a new anti seizure medicine to numb his nerves, he was on gabapentin and is now being weaned off to start the new one.  He is on a H1, H2 and a seratonin blocker.  I know it takestime for the medicine to work but he is in so much pain.  Any suggestions would be appreciated.  Thanks!!!!

22 September 2009 01:21 PM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #13 - 12/28/10 at 16:35:55
 
(Archived from Mikev   - original forum)
PATDAL:
I was looking at posts when  found this one. If you're still out there, see my post about silk & microfiber as an answer to cotton being too rough on his skin & causing lots of pain. It doesn't eliminate the pain but lessens it. I have the same mainly in arms, legs, & feet. On the neuro end, when it was isolated to my feet I went to several neuro docs  & was on neurontin & then tried lyrica.They couldn't figure out what was going on because my masto was acting like neuropathy. Found the best neuro in St Louis, but it took 2 months to get to see her & before I got in mine went systemic.Worked with her a few months & took many blood test to eliminate what it could be, tryed nortripelene & 1 other painkiller I forgot name of. Had a body nerve conduction test that was so painful that I almost passed out but withstood it to see if it would tell her something. Finally she did the plain prick test with a needle & I was so bad that with my eyes closed I could feel it before it touched my skin. She  concluded  it was something else masquerading as a neuro problem  but not neuro & sent me on my way. This is just my story & your husband could be different but with a Nasid issues, painkillers are counter productive & triggers for histamine release which in my case means more pain not less.
MikeV


14 January 2010 11:30 AM
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Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #14 - 12/28/10 at 16:37:26
 
(Archived from lori612  - original forum)
Deborah, Funny that you should mention dropping out of your PhD program. I just began one this September and my most recent round of urticaria began in July. Maybe my body knew the stress was on the way. Last time I had hives this bad was while I was doing my masters, back in 2004-2005, although I had round of hives that lasted 15 months between then and now. My stomach kills me when I'm getting hives and I become allergic to EVERYTHING. Short list: antihistamines - H1 and H2 blockers (yes, they make the hives WORSE), salicylates (including aspirin, berries, you name it), I even had a rebound allergy from an epi pen shot! These are all things I'm not allergic to when I'm healthy, but once I get sick, forget it. Based on the masto videos I watched with Drs Akin, Castells, Greenberger (all at Brigham and Women's) and Theoharides (at Tufts), I've made an appointment at Brigham and Women's. I've seen a lot of doctors and had a lot of tests, but most of my tests come back normal. It's crazy: I have all the symptoms of mast cell disorder but the tests say I'm fine. I'm waiting on results from a 24-hour histamine and prostaglandin test. I should mention I have other immune problems: endometriosis, Raynaud's and hypothyroidism. My body loves attacking itself, apparently. Fortunately, being in Amherst means less than a 2 hour drive to Boston. Thanks for everything you do in keeping the communication going between mast cell disorder sufferers!
Lori

27 October 2010 12:12 PM
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